Hold Fast

Shall we adapt then, 

you and I, 

and bloom in the quiet fright of the dark? 

Let us learn from our sisters 

the cactus lilies, 

who open their petals 

in the cool desert air

‘midst deathly howls and last rites. 

How gracious, how unsurprised. 

Theirs is a vibrant fortitude. 

Ours the same if we hold fast. cactus lillies

Beloved Daughter

I failed you again. 

The old sin crept in like a shadow, and I,

weak, foolish, wretched as I am,

gave in. 

I kept the door closed, denying Your nearness, 

while I painted myself with guilt and shame, 

drab colours for a drab soul. 

And all the while, there was a still, small voice at the window saying,

“You are my Beloved Daughter.” 

I couldn’t believe. 

And I couldn’t sleep. 

 

I failed You again! 

On the mountain, at the summit, 

belief was breathing, and faith was seeing. 

I had no sorrow great enough to eclipse Your love. 

But, here in my valley, the pain shakes me to the ground.

I turn my back on the Son, 

undone by grief. 

And yet there’s a strong patient hand and that still, small voice reaching out. 

“You are my Beloved Daughter. 

In you I am well pleased.” 

But I can’t believe. 

And I can’t sleep. 

 

I failed you again, 

and I am so very tired. 

How quickly these buried fears rise up to choke me, 

and I fall to their voices, defeated and scared. 

Is there relief? 

Let me do something to prove my worth!

Let me make some sacrifice! 

Ask me anything and I will do it. 

I will. 

A window is thrown open, a hand clasps mine, and a voice of love drowns out the rest. 

“You are my Beloved Daughter.

In You I am well pleased.” 

I believe. 

And there is rest with Him who is well pleased. 

 

Dismounting The Unicycle

My brother in law is one of the most talented people I know. He can shear sheep and alpacas (llamas, too), and always has the best ideas for fun activities (like that one time he made a drive in movie theatre in his garage). By far the greatest thing he can do, though, is ride a unicycle…and juggle at the same time.

I was very sick the first time I saw him do this. He and my sister sent me a music video to make me smile. They succeeded, mostly because my sister is hilarious whenever she’s attempting to look thug, and also because my brother-in-law decided to wear red long-johns. If a man juggling on a unicycle in his pjs isn’t a recipe for humor, I don’t know what is.

I’ve always felt like the whole unicycle thing is very impressive. It is one of the most casually cool things you could ever say at a party. “Yeah, I work in finance…and I also rode a unicycle here.” Nobody is ever going to look down on you for riding a unicycle. If anything, they’re thinking how incredibly cool you are, and wishing they were the same way. “Man, that guy in finance really has it all together. I mean, he rides a unicycle.”

During Labor Day, a couple of years ago, I had no plans and no invitations to anybody else’s plans. I found a nearby lake and began driving, soaking in the rare Wisconsin heat. It was a good day, but also a hard one. I was feeling tired and lonely, and going somewhere by myself wasn’t really helping. In Lyme Warrior speak, “I was low on spoons that day.” On the drive over, I slowed down coming down a hill and beheld one of the rarest sights: a unicycle rider. He rode confidently down the side of the highway, seemingly without a care to bring him down. This feat of his was made more impressive by the sheer danger of it all. If he fell, he’d be hit by a car on one side, or drop into a steep ditch on the other. I stared at him as I drove past, in awe of his superhuman accomplishment.

We chronic illness folk call ourselves Spoonies because we never really know how much energy and ability we are going to wake up with in the morning. We can put in a lot of effort, eat well, get to sleep on time, and take all of our meds, but that doesn’t guarantee that we won’t wake up feeling weak and strangely hungover the next day. Lyme (or any chronic illness) is often like riding a unicycle while trying to juggle spoons. We get up in the morning, count our spoons, mount the unicycle, and take off down a dangerous road. Falling means we might miss work, or a rare social event. Dropping a spoon means we’ve got even less energy than we had before we started. And trying to ride a unicycle doesn’t help.

I often struggle with this feeling that everyone else has it together, and I am the one who is somehow missing something about life, relationships, God, the universe, etc. Having Lyme increases that feeling of inadequacy. “Why is everyone else able to ride their unicycle? Why does everyone else have all of this figured out?” The secret is, of course nobody does. We can never know all of the pain others are experiencing, or how on earth they got so many spoons while we have so few.

I decided to get off the unicycle. I decided to stop trying to be perfect, to “have it all together.” Nowadays, it’s more like an arduous walk between mile markers (or half mile markers). That’s the reality, and it’s okay. My journey with illness is my journey, and I don’t have to ride a unicycle while juggling spoons to complete it.

To All The Girls Awake At 1 AM

Don’t try to sleep. 

Don’t try to dream. 

Instead, reason your way to the worth of today. 

Not everything matters, but you are valuable. 

Remember the way the trees hold their black barren arms 

to the brightening sky of morning, 

 the rain and thunder of afternoon,

 the golden, violet sky of evening. 

They are always accepting chaos and blessing

without warning. 

This is how you will learn to receive. 

Don’t try to sleep. 

Don’t try to dream. 

Don’t look at that screen. 

Remember how you can form words, those beautiful strings of letters and sounds 

like persimmon,

cantankerous,

 grandeur,

and tranquil. 

Remind yourself of how good it is to think and to love, 

and remember that heartbreak can beget depth. 

Don’t forget the freedom you have to invite and welcome. 

(Also, the freedom to slam doors and break plates.)

Reason through the day, noticing its

small glories, 

for that is where your weary soul may rest. 

Say aloud all those funny puns you find, and then 

Cry over the sad words you want to leave behind

But cannot. 

Don’t try to sleep. 

Don’t try to dream. 

Reason. Remember. Remind. 

 

Brownies and…Broccoli?

I just want this brownie.

I look at it, the way it sits smothered in caramel, bowing beneath the weight of its sugary load, and I heave a sigh. It isn’t going to make me feel better, but dang, it sure looks like it would.

One of the frustrating thing about Lyme is that it often feels as if there is no leeway. Other people can afford a little irresponsibility, maybe have a brownie or some ice cream. Maybe they decide to stay up late two nights in a row, and they feel a “little out of it” over the next few days. (I have to try not to laugh when these people bemoan their current state. They think they’re tired)

But if you have Lyme, or any kind of chronic illness, you can’t just watch movies into the wee hours, or eat what you want one day. (Cheat days are a bad idea for us, am I right?) All of those things come with a price. Stayed up late? I will feel very sick for the next couple of days. Ate a brownie? I may find my anxiety getting worse, my lethargy increasing, and my brain fog becoming even more severe. Stayed up late AND ate sugar? “Oh, sweet thang”, my body whispers before screaming, “HOW COULD YOU DO THIS TO ME???”

All of these restrictions have forced me to look at what I am putting in my body….most of the time. It’s as if I constantly forget and have to be reminded that my body is still NOT OKAY. (And yes, my body generally speaks in all caps while forcing me back to bed, or into the fetal position on the couch)

Girl, I know you want that brownie, that piece of cake, that bowl of ice cream smothered in chocolate sauce. I know sometimes all of those little spirochetes are dancing around in your blood stream singing, “Just give me some sugar/ Just a little bits enough…” But listen to me, you can be strong, you can say no, and you can resist all those people who don’t understand our battle with sugar and exhaustion.

One thing that has helped me (this may sound weird) is to roast a bunch of veggies. Throw them in the oven on a high heat, maybe 425 or 450, and then devour them instead of the brownies. I use broccoli, sweet potatoes, brussel sprouts, or beets. I found out while reading Woman Code (an excellent book, review coming soon) that when you roast veggies, they taste sweeter, and this really helps curb all of those cravings. This is especially helpful for me because, try as I might, I don’t always feel like stuffing my face with salad. I much prefer pulling a bunch of roasted sweet potatoes and beets out of the oven, inhaling their warm sweetness like a drug. It’s not brownies, BUT it does make me feel better.

Here’s to roasting veggies!

All my love,

Rachel

Arm Us

Dear Chronic Illness Friends,

There are days when I wake up feeling weak still, as though my brain is one great fuzzy piece of mush, and my body is not capable fo supporting it. The day seems to be one long battle that I cannot face. I recently found this prayer and thought it was so helpful for days like that.

O God, you have called us to be your children and have promised that those who suffer with Christ will be heirs with him in your glory: Arm us with such trust in him that we may ask no rest from his demands and have no fear in his service; through Jesus Christ our Lord, who lives and reigns with you and the Holy Spirit, one God, for ever and ever. Amen.

Trust will be my armor, then, when I feel I cannot face the fight.

All my love,

Rachel

 

Dear Denial Girl: A Letter To Myself Post Diagnosis

Dear Denial Girl (aka Me),

I know you think everything is all right, or, at least, you’re pretending it is. I know you are shrugging off how awful you felt during your first treatment, and refusing to admit how generally terrible you feel.

You’ve told everyone, but it still doesn’t feel real. You feel as though you’re on another planet from the rest of your friends, who have never had to consider the effects sugar, dairy, or gluten may have on them.

Listen to me: make friends with honesty. Your body is broken in a lot of ways, and you need to be honest about how terrible you feel. If everything feels crappy, it’s probably because it is. Remember how awful you felt just after the treatment, how you forced yourself to sit upright in that chair until your sister said, “Hey, it’s okay to lie down. You need to rest.” Remember those words and say them to yourself every day for the next year until it’s a part of your blood: it’s okay to lie down. It’s okay to rest. I need to rest. Because the truth is, you do.

Dear one, denying how your body is really feeling only sets yourself up for more heartbreak. Your body knows what’s happening, and if you keep pushing and pushing, you will eventually crash. Don’t wait for the crash. Trust that this rest you are getting now is what your body needs.

Here’s the other thing: be honest about the hard truths. God doesn’t need you well to accomplish His purposes for the world. God doesn’t need you running around checking off your to do lists quickly and efficiently. He is perfectly all right without your achievements, and knew you would be on the couch today with zero energy and an unfinished list of incomplete tasks in your half kept home. He isn’t asking for you to be perfect. What He is asking for is your trust.

He is saying, “Come to me, weary one, and I will give you rest.”

I know it seems strange to trust the God who has allowed this to happen. I know you’re upset because you feel betrayed. You had so many beautiful plans that made so much sense to you, and this new thing, this new unplanned monstrosity that is your life is really difficult to deal with. That’s why you keep denying how it makes you feel, how hard it is for you to handle the fact that you are really sick and need help.

Be honest. Accept help from other people. Tell God the struggles. This next year is going to bring a lot of pain you never realized you could feel, and alarming discomfort. There will be days when you struggle to get up and keep living, days when you feel like your life is a complete waste, BUT IT IS NOT.

Do not deny what you feel, but also do not deny what you to know to be true: God is still God even when He allows something this difficult.

All my love,

Rachel

 

Sonnet 2

Signed up for love, welcomed humility

And pain, each with their own distinctive voice

Into my song, their voices fighting futility.

Walking towards You is my daily choice.

Help me neglect these lesser melodies found

In sunlit grass. The wine, sweet and easy

Makes me forget to love. I am bound

By its music which vows to appease me.

My heart thrills to its cadence, its warm theme

But it is empty, devoid of all renewal.

Lies run through it like a ragged seam

My freedom is found in patient refusal

Meet me here in this closet darkening

Where at last I stop, in the stillness harkening.

The Many Ways To Be Sick

I remember very distinctly how sick was defined as a child: a fever and/or vomit. You could also stay home if you had a really terrible cough or cold, but it had to be so bad that you were struggling to breathe.

Lyme disease is difficult because we don’t always look sick. People often use this as an excuse to reject our claims. “Well, you don’t look that sick, and you’re not confined to bed, so it must not be that bad.” (I usually want to say, “I wish I was in bed!”) The word “sick” is too weak for my taste. Eskimos have hundreds of words for snow, and we have one word for something that can affect our mind, heart, and body? Maybe we just need a more in depth list of definitions.

Sick: Rachel’s Definitions

  1. Nauseous, and sort of achy.
  2. Achy, with a fever, and a side of nausea.
  3. Dizzy with extensive brain fog.
  4. Minimal brain fog with a fever.
  5. Coughing the day away, with some achy joints for company.
  6. Throwing up a meal that definitely WAS NOT gluten/dairy/sugar free.
  7. Wishing I could throw up something I should not have eaten (yes, you, chocolate cake. I am looking right at you)
  8. Panic ridden, fever ridden, wishing I could ride health into the sunset and never come back.
  9. Dizzy with achy joints.
  10. Depressed to the point of exhaustion, but unable to sleep due to INSOMNIA.
  11. Feeling like my head is full of swarming bees
  12. Anxious about talking about being sick because I’m really not getting any better.
  13. Perfectly healthy….aside from the dangerous gas heating up my room (hope my roommate doesn’t come home soon)
  14. Bloated from dangerous, un-expelled gas. (Seriously, these jeans should fit. I literally can’t gain weight on a dairy/sugar/gluten free diet)
  15. Unable to sleep due to confusion over previously listed symptoms.

I’m sure there’s a whole lot more I could list. Let me know what some of yours are in the comments. What do you mean when you say, “I’m sick”?

 

Wanting Something More

“Aim at Heaven and you will get earth ‘thrown in’: aim at earth and you will get neither.” -C.S. Lewis, Mere Christianity-

I remember reading this quote somewhere, and writing it frantically in my journal. It seemed the perfect encapsulation of this idea that we must be seeking that which is eternal, rather than what is material. Since then, I have tried reading the book Mere Christianity three different times. The verdict? Boring. I don’t know where all those exciting, interesting quotes were found, but I could not get through the first one hundred pages.

I decided though, after reading another blogger’s post about the development of the Christian mind (see https://ethanrenoe.com/2017/12/06/the-dumbing-down-of-christianity/), that I should give it another try. Apparently all those other times I was reading it, I had just needed to get past the first few chapters.

Today, I finally found the above quote in Lewis’ chapter on Hope. I was surprised by what I read directly following it:

“Aim at Heaven and you will earth thrown in: aim at earth and you will get neither. It seems a strange rule, but something like it can be seen at work in other matters. Health is a great blessing, but the moment you make health one of your main, direct objects you start becoming a crank and imagining there is something wrong with you. You are only likely to get health provided you want other things more- food, games, work, fun. In the same way, we shall never save civilization as long as civilization is our main object. We must learn to want something else even more.” (Italics and emphasis mine)

Obviously, I don’t think I need to stop caring about my body, or that any of this is psychosomatic. All of us Chronic Illness People are not cranks, and we have to fight very hard sometimes to help people see that. Health is one of our main objectives because so much has been taken from us. Each of us remembers what it was like to be well, and wants very much to be that way again.

I have to ask myself why I want to be healthy in the first place, though. What’s my reason for fighting? Why am I working on this? What is the something more that I need to be wanting?

A lot of it comes back to me wanting to do these big, impressive things for God. It’s funny how I want so badly to impress the God of the universe. It’s as if I think that starting an orphanage, leading a bunch of people to the Lord, or being admired as a worship leader are going to impress the infinite Being who created the entire world. As if He’s going to say, “Wow, that’s amazing. How did you do that?”

Deeply rooted alongside this desire to prove myself to God is the other desire to prove myself to people. I want them to look at me and be impressed, to say, “Wow, you did that?” This is a part of my daily rituals, something I do without thinking. In the dark times, when my symptoms have seemed like something I could never defeat, I have often been angry with God because, “I haven’t done anything for You!” I am becoming what Lewis might term a “spiritual crank.” By making doing things for God my main object, I am completely missing the point of loving God and others more than myself. I have aimed at earth.

In Every Moment Holy by Douglas Kaine Mckelvey, there is a liturgy entitled For Those Who Have Not Done Great Things For God. In reading this prayer today I stumbled upon the following quote:

“Seek not your own glory. Seek God, and his glory will be seen in you, radiant in humility and in the strength of his might made manifest even in your brokenness, evident even in the smallest of services rendered unto him or offered in his name, even though they be seen by none but you and him; your reward is secure.”

Today, where you are in your health journey, I pray that you will think of your reward as being secure in Christ. Even the littlest thing can be sacred as we seek to find our something more in God.